Managing myositis starts with proper treatment, including medication and therapy. But there is more we can do to help ourselves each day. These daily decisions may influence the course of our illness: whether our symptoms get worse; whether we stay on an even keel or experience a flare.
Things we need:
- Education. Learning about our illness. This allows us to make informed decisions about all aspects of our life and treatment.
- Personal Responsibility. Taking action including the basics of taking medication as prescribed and keeping appointments with doctors and the sometimes more difficult tasks such as asking for help from others when we need it.
- Perspective. Having a wider perspective on the disease is important: painful times won't last forever and it may be difficult to believe things will get better again unless we have this wider perspective. Also realising there are people worse off than ourselves really puts our disease in perspective.
- Self-Advocacy. This means being an effective advocate for yourself so you can get the services and treatment you need.
- Support. Support from others is essential to feeling less lonely and enhancing the quality of your life. Having someone to talk to who understands is important and this could be through a forum such as Daily Strength.
- Hope. Believing that you can cope is essential. With good symptom management, and pacing and understanding your limitations, it is possible to experience long periods of feeling okay, even good.